In the Netherlands, client and family participation in care for people with intellectual disabilities has been in vogue for a long time, and increasingly receives attention (KPMG and Vilans 2017). However, the perspective and experiential knowledge of service users and relatives is often still insuBiciently used for the co-creation of care. The professional perspective is often still dominant. In addition, professionals mainly focus on clients and less on relatives, even though relatives often play an important role in the client’s (quality of) life (Wiersma 2017). The project ‘Inclusive Collaboration in Disability Care’[1] (ICDC) focusses on enhancing equal communication between people with intellectual disabilities, their relatives, and professional caregivers, and hence contributes to redressing power imbalances in longterm care. It investigates the question: “How can the triangle of client, relative and professional caregiver together co-create better care and support?”.
Cultural heritage buildings and sites are threatened by the effects of climate change, especially in coastal zones. Risks not only include floods and submersion, but also less visible risks such as effects of moisture levels or, alternatively, drought. At the same time, it is important to involve people in the care of heritage buildings and sites, to stimulate them to cherish, admire, and to enrich their lives with the heritage locations, buildings and stories.This paper aims to contribute to our knowledge on the application of valuation approaches. The topic of heritage and sustainability calls for an approach that encompasses a broad range of values. Theoretically, this paper relies on the approach of ‘Design for Values’. This approach starts with the identification of the values that are aspired to in a design project. These values are connected to norms, which describe how the identified value can be reached. On a more technical or concrete level, requirements are noted down, which specify the precise conditions a design must fulfill. In this way, a ‘value hierarchy’ can be outlined, which forms a guide for the designing process. In a value hierarchy, the levels are connected in two ways: downward by ‘specification’, and upwards, by the phrase ‘for the sake of’. After the design is finalized, a verification step is needed to ascertain if the aspired values indeed have been achieved in the design.The empirical case study for this paper is provided by the investigations of the Wisloujcsie Fortress and surrounding area at the SOS-workshop in Gdansk in October 2022. In our investigation of the site several problems and challenges came to light, which we summarized in a SWOT-analysis. For sustainable development of the area and the conservation of cultural and natural heritage we identified values connected to heritage, water, public access, and social values, see figure 1. In the paper, we will further elaborate on the norms and requirements that follow from each of these values. Also, we want to reflect on a preliminary verification step. We conclude that to produce designs that successfully achieve the climate and sustainability goals of the SOS-Climate Waterfront project, a ‘model valuation framework’ could be a useful guide for the design process. The first elements of such a framework are presented in our paper. Applying such a valuation framework stimulates ethical reflection during the design process and evaluation of the result. It thereby strengthens the connections between sustainability goals and urban design.
Introduction: Self-management is considered a potential answer to the increasing demand for family medicine by people suffering from a chronic condition or multi-morbidity. A key element of self-management is goal setting. Goal setting is often defined as a moment of agreement between a professional and a patient. In the self-management literature, however, goal setting is regarded as a circular process. Still, it is unclear how professionals working in family medicine can put it into practice. This background paper aims to contribute to the understanding of goal setting within self-management and to identify elements that need further development for practical use. Debate: Four questions for debate emerge in this article: (1) What are self-management goals? (2) What is necessary to accomplish the process of goal setting within self-management? (3) How can professionals decide on the degree of support needed for goal setting within self-management? (4) How can patients set their goals and how can they be supported? Implications: Self-management goals can be set for different (life) domains. Using a holistic framework will help in creating an overview of patients’ goals that do not merely focus on medical issues. It is a challenge for professionals to coach their patients to think about and set their goals themselves. More insight in patients’ willingness and ability to set self-management goals is desirable. Moreover, as goal setting is a circular process, professionals need to be supported to go through this process with their patients.
The project aims to improve palliative care in China through the competence development of Chinese teachers, professionals, and students focusing on the horizontal priority of digital transformation.Palliative care (PC) has been recognised as a public health priority, and during recent years, has seen advances in several aspects. However, severe inequities in the access and availability of PC worldwide remain. Annually, approximately 56.8 million people need palliative care, where 25.7% of the care focuses on the last year of person’s life (Connor, 2020).China has set aims for reaching the health care standards of the developed countries by 2030 through the Healthy China Strategy 2030, where one of the improvement areas in health care includes palliative care, thus continuing the previous efforts.The project provides a constructive, holistic, and innovative set of actions aimed at resulting in lasting outcomes and continued development of palliative care education and services. Raising the awareness of all stakeholders on palliative care, including the public, is highly relevant and needed. Evidence based practice guidelines and education are urgently required for both general and specialised palliative care levels, to increase the competencies for health educators, professionals, and students. This is to improve the availability and quality of person-centered palliative care in China. Considering the aging population, increase in various chronic illnesses, the challenging care environment, and the moderate health care resources, competence development and the utilisation of digitalisation in palliative care are paramount in supporting the transition of experts into the palliative care practice environment.General objective of the project is to enhance the competences in palliative care in China through education and training to improve the quality of life for citizens. Project develops the competences of current and future health care professionals in China to transform the palliative care theory and practice to impact the target groups and the society in the long-term. As recognised by the European Association for Palliative Care (EAPC), palliative care competences need to be developed in collaboration. This includes shared willingness to learn from each other to improve the sought outcomes in palliative care (EAPC 2019). Since all individuals have a right to health care, project develops person-centered and culturally sensitive practices taking into consideration ethics and social norms. As concepts around palliative care can focus on physical, psychological, social, or spiritual related illnesses (WHO 2020), project develops innovative pedagogy focusing on evidence-based practice, communication, and competence development utilising digital methods and tools. Concepts of reflection, values and views are in the forefront to improve palliative care for the future. Important aspects in project development include health promotion, digital competences and digital health literacy skills of professionals, patients, and their caregivers. Project objective is tied to the principles of the European Commission’s (EU) Digital Decade that stresses the importance of placing people and their rights in the forefront of the digital transformation, while enhancing solidarity, inclusion, freedom of choice and participation. In addition, concepts of safety, security, empowerment, and the promotion of sustainable actions are valued. (European Commission: Digital targets for 2030).Through the existing collaboration, strategic focus areas of the partners, and the principles of the call, the PalcNet project consortium was formed by the following partners: JAMK University of Applied Sciences (JAMK ), Ramon Llull University (URL), Hanze University of Applied Sciences (HUAS), Beijing Union Medical College Hospital (PUMCH), Guangzhou Health Science College (GHSC), Beihua University (BHU), and Harbin Medical University (HMU). As project develops new knowledge, innovations and practice through capacity building, finalisation of the consortium considered partners development strategy regarding health care, (especially palliative care), ability to create long-term impact, including the focus on enhancing higher education according to the horizontal priority. In addition, partners’ expertise and geographical location was also considered important to facilitate long-term impact of the results.Primary target groups of the project include partner country’s (China) staff members, teachers, researchers, health care professionals and bachelor level students engaging in project implementation. Secondary target groups include those groups who will use the outputs and results and continue in further development in palliative care upon the lifetime of the project.
"Lifestyle and Digital Sovereignty, a new-media arts approach to collective technological empowerment for holistic care" is een praktijkgericht artistiek onderzoekstraject dat een nieuwe mediakunstinterventie creëert in het domein van de gezondheidszorg. Dit project onderzoekt hoe artistieke interventies die technologische processen integreren kennis kunnen genereren die kan worden toegepast in een bredere context, namelijk het verhogen van gezonde levensstijlgewoonten bij de bevolking. Het onderzoekt hoe artistiek onderzoek de digitale geletterdheid kan vergroten en deelnemers in staat kan stellen hun levensstijlgewoonten te beheren met behulp van kunstmatige intelligentie, waardoor ze op een soevereine manier kunnen interageren met technologische sensoren en systemen. Het project omvat een mensgerichte benadering van AI, in overeenstemming met de ethische en morele vereisten ervan. Het zal veldonderzoek toepassen in de vorm van AT-LABS: een ruimte in kaart gebracht door middel van technologie en artistiek geïntervenieerd door middel van geluid, licht en choreografie, om een optimale bodem te creëren voor artistiek onderzoek naar gemeenschapsvorming, technologisch gemedieerde interactie, digitale geletterdheid en performatieve praktijk, die een interdisciplinaire aanpak mogelijk maakt. De AT-LAB's vinden iteratief plaats tijdens het vierjarige doctoraatstraject. De informatie die bij elke interventie wordt verzameld, zal leiden tot aanpassingen en verbeteringen in de volgende iteraties. De tweede onderzoekslijn zal de artistieke mogelijkheden van nieuwe mediakunst in deze context bekijken en onderzoeken. Het project wordt uitgevoerd binnen het Consortium Healthy Living as a Service (HLaS), een programma geleid door het Universitair Medisch Centrum Groningen (UMCG). Verder zal worden samengewerkt met V2_ Lab for the Unstable Media, en ARC in het Noorden. Het wordt begeleid door Prof. Dr. Anke Coumans van de onderzoeksgroep Image in Context van de Hanze Hogeschool en Dr. Bianca Herlo, UDK Berlin, Design Research Group. Secundaire professionele begeleiders zijn Dr. Michel Dartel, V2_ Avans Hogeschool, en Prof. Dr. Claudine Lamoth, UMCG, en leider van het HLaS project.
In leaving the more traditional territories of the concert performance for broader societal contexts, professional musicians increasingly devise music in closer collaboration with their audience rather than present it on a stage. Although the interest for such forms of devising co-creative musicking within the (elderly) health care sector is growing, the work can be considered relatively new. In terms of research, multiple studies have sought to understand the impact of such work on musicians and participants, however little is known about what underpins the musicians’ actions in these settings. With this study, I sought to address this gap by investigating professional musicians’ emerging practices when devising co-creative musicking with elderly people. Three broad concepts were used as a theoretical background to the study: Theory of Practice, co-creative musicking, and Praxialism. Firstly, I used Theory of Practice to help understand the nature of emerging practices in a wider context of change in the field of music and habitus of musicians and participants. Theory of Practice enabled me to consider a practice as “a routinized type of behaviour which consists of several elements, interconnected to one another: forms of bodily activities, forms of mental activities, ‘things’ and their use, a background knowledge in the form of understanding, know-how, states of emotion, and motivational knowledge” (Reckwitz, 2002, p. 249). Secondly, I drew the knowledge from co-creative musicking, which is a concept I gathered from two existing concepts: co-creation and musicking. Musicking (Small, 1998), which considers music as something we do (including any mode of engagement with music), provided a holistic and inclusive way of looking at participation in music-making. The co-creation paradigm encompasses a view on enterprise that consists of bringing together parties to jointly create an outcome that is meaningful to all (Prahalad & Ramaswamy, 2004; Ramaswamy & Ozcan, 2014). The concept served as a lens to specify the jointness of the musicking and challenge issues of power in the engagement of participants in the creative-productive process. Thirdly, Praxialism considers musicking as an activity that encompasses “musical doers, musical doing, something done and contexts in which the former take place” (Elliott, 1995). Praxialism sets out a vision on music that goes beyond the musical work and includes the meanings and values of those involved (Silverman, Davis & Elliott, 2014). The concept allowed me to examine the work and emerging relationships as a result of devising co-creative musicking from an ethical perspective. Given the subject’s relative newness and rather unexplored status, I examined existing work empirically through an ethnographic approach (Hammersley & Atkinson, 2007). Four cases were selected where data was gathered through episodic interviewing (Flick, 2009) and participant observation. Elements of a constructivist Grounded Theory (Charmaz, 2014) were used for performing an abductive analysis. The analysis included initial coding, focused coding, the use of sensitizing concepts (Blumer 1969 in Hammersley, 2013) and memoing. I wrote a thick description (Geertz, 1973) for each case portraying the work from my personal experience. The descriptions are included in the dissertation as one separate chapter and foreshadow the exposition of the analysis in a next chapter. In-depth study of the creative-productive processes of the cases showed the involvement of multiple co-creative elements, such as a dialogical interaction between musicians and audience. However, participants’ contributions were often adopted implicitly, through the musicians interpreting behaviour and situations. This created a particular power dynamic and challenges as to what extent the negotiation can be considered co-creative. The implicitness of ‘making use’ of another person’s behaviour with the other not (always) being aware of this also triggered an ethical perspective, especially because some of the cases involved participants that were vulnerable. The imbalance in power made me examine the relationship that emerges between musicians and participants. As a result of a closer contact in the co-creative negotiation, I witnessed a contact of a highly personal, sometimes intimate, nature. I recognized elements of two types of connections. One type could be called ‘humanistic’, as a friendship in which there is reciprocal care and interest for the other. The other could be seen as ‘functional’, which means that the relationship is used as a resource for providing input for the creative musicking process. From this angle, I have compared the relationship with that of a relationship of an artist with a muse. After having examined the co-creative and relational sides of the interaction in the four cases, I tuned in to the musicians’ contribution to these processes and relationships. I discovered that their devising in practice consisted of a continuous double balancing act on two axes: one axis considers the other and oneself as its two ends. Another axis concerns the preparedness and unpredictability at its ends. Situated at the intersection of the two axes are the musicians’ intentionality, which is fed by their intentions, values and ethics. The implicitness of the co-creation, the two-sided relationship, the potential vulnerability of participants, and the musicians’ freedom in navigating and negotiation, together, make the devising of co-creative musicking with elderly people an activity that involves ethical challenges that are centred around a tension between prioritizing doing good for the other, associated with a eudaimonic intention, and prioritizing values of the musical art form, resembling a musicianist intention. The results therefore call for a musicianship that involves acting reflectively from an ethical perspective. Doctoral study by Karolien Dons
